Part 1: Semi-structured interviews
Totally 17 themes in the 4 dimensions of curriculum design were identified.
Goals
Theme 1: Outcome improvement
All patients and HCPs considered the most important goal of diabetes education is to improve diabetes outcome, including both physiologically and psychologically. To live ‘a normal life’ or have ‘better quality of life’ is of top concern.
‘A qualified education programme is supposed to impact on patients’ metabolic control. It is critical in improving the quality of life for the patients and their family.’
[Healthcare professional (H) 1]
‘I want to stabilize my glucose levels, to decrease hypoglycaemic episode as well as very high blood sugar, and ultimately, to avoid complications.’
[Patient (P) 1]
‘What I hope is to be able to relieve my anxiety, and thus live a normal life.’
[P9]
Theme 2: Behaviour modification
It’s not unusual for HCPs in China to encounter T1D patients admitted with diabetic ketosis due to discontinuation of insulin therapy for treatments ‘that can cure T1D’. Moreover, patients always get confused with different insulin categories and may buy a wrong cartridge. Therefore, most HCPs embraced the importance of equipping patients with enough basic knowledge to avoid unnecessary cost.
‘The most important goal of education is to reduce fundamental errors. For instance, some patients choose informal Chinese traditional medicine instead of insulin in the hope to cure T1D; some patients misuse NovoRapid 30 Mix as bolus instead of NovoRapid. These can be avoided through proper education right after diagnosis.’
[H2]
‘Through education, patients will have a correct concept of diabetes self-management. … With various online resources which might be misleading, patients need easy access to professional educational materials that can teach right from wrong, and thus straighten things up.’
[H4]
Contents
Theme 1: Living with T1D
HCPs all agreed that the teaching session should start with a basic introduction to T1D.
‘In the very beginning patients need to clearly understand what they are dealing with every day. … What causes T1D, what are some of the most met misunderstandings of T1D.’
[H7]
Other than basic concepts, patients were generally more concerned about ‘to build a healthy attitude towards diabetes’ in the first place. Over half patients mentioned an ice-breaking start with establishing their confidence to live with diabetes for the rest of their lives.
‘I think in the first class, it should be clarified what the benefits are for controlling diabetes. It should be emphasized that we can still have a normal life if diabetes is under controlled, to build our confidence.’
[P2]
‘… To help us correctly recognize ourselves who will be living with T1D life-long.’
[P5]
Theme 2: Self-monitoring of blood glucose (SMBG)
The importance of SMBG has been greatly underestimated by most patients [18]. Over 60% patients in our T1D clinic tested glucose less than 4 times/day (data unpublished). However, only a few patients in the interview mentioned SMBG.
‘I started with testing my sugar over 7 times/day in the hope to figure out my glucose pattern. But soon I found it was kind of mission impossible. Then I just gave up and let it be. Now I just test randomly. As long as it’s neither too high nor too low, I’m satisfied.’
[P4]
‘I’ve heard there is a way to test blood sugar without finger prick. I’d like to know more about that.’
[P10]
Patients’ neglect on SMBG is exactly why HCPs pay specific attention to this topic. New techniques for glucose testing like continuous glucose monitoring also need to be introduced.
‘In addition to the normal range, frequency, and correct procedures of testing, the importance of SMBG should be emphasized in different conditions, helping patients to form a habit of testing.’
[H7]
Theme 3: Managing pressure
Almost all patients were ‘under pressure’ at different levels and occasions—pressures in the process of schooling, working, and establishing relationships; how to communicate with people around them about diabetes.
‘My previous research found that T1D patients are in great pressure but generally don’t know how to release it, or to effectively communicate with families and friends to get supports.’
[H3]
‘Since I had diabetes, I have no longer been in the mood for starting a romantic relationship. I strongly believe no one will accept a young man with diabetes as boyfriend.’
[P4]
‘All my classmates know that I’m diabetic. Every time I inject insulin before meal, I think they are pitying me. So I just hide. I don’t like discussing it with others.’
[P11]
Theme 4: Insulin
Insulin is essential for blood glucose control in T1D. Both the dose and timing of bolus injections are key factors in controlling post-prandial glucose. The optimal time to administer mealtime insulin may differ between patients or even between meals [19]. However, it’s not easy for the patients to understand all by their own how different insulin works.
‘I want to learn the effect (PK-PD) of different insulin, like the time of onset, peak time, and etc.’
[P6]
‘Patients need to know the basics of insulin, such as its physiological effects and classification. This is the prerequisite of administering correct insulin at correct time.’
[H7]
HCPs also emphasize on self-adjustment of insulin dose in daily routine in order to help patients to build ‘a normal life’.
‘Blood glucose varies every day. Instead of giving fixed doses by the doctors, it’s more important for the patients to grasp how to adjust doses properly according to their own meals and activities.’
[H10]
Theme 5: Carbohydrate and carb-counting
Carbohydrate is principle in Chinese cuisine. Although the way of cooking and combination of ingredients are more diversified and unpredictable compared to western food culture, consensus was still reached that, along with insulin, identifying carbohydrates, knowing carb-counting and carb-insulin ratio, are fundamental.
‘Through understanding how carbohydrates and other ingredients affect glucose, patients can learn to inject boluses before meals or snacks. If they want to live a less restricted life while keeping sugar stable, carb-counting is a basic skill.’
[H9]
‘I heard from other patients to read food labels, but I still have no idea what to look at. Energy? Carbs? What’s the meaning of reading these numbers anyway? I am so afraid of being in the supermarket now, dare not to buy anything.’
[P9]
Theme 6: Hypoglycaemia
Hypoglycaemic events will be encountered in every patient’s life, but not everyone knows the right procedure to deal with it. All basic dimensions of hypoglycaemia need to be elucidated.
‘In fact, quite a few patients are correcting hypoglycaemia in the wrong way without knowing. They need to learn how to treat and prevent hypoglycaemia correctly.’
[H3]
‘Besides, we need to let them understand what causes low blood glucose.’
[H9]
‘I want to know how to reduce hypoglycaemic events.’
[P2]
Theme 7: Physical activities
The biggest obstacle lying in front of patients with physical activities is that most people don’t have any idea on the trend of glucose fluctuations during or after exercises. Some experienced repeated hypoglycaemia after housework. Some didn’t know their glucose changes because they never checked before or after.
‘I don’t know what type of exercise fits me. I assume exercise can lower blood sugar, but my sugar level can’t even drop for 1 mmol/L after 5km running.’
[P1]
‘Physical activities definitely have profound effects on glucose levels thus should be clarified. For example, how glucose might fluctuate with different types, duration, and strength of activities. How to make certain adjustments on food intake and insulin dose before, during, or after physical activities.’
[H1]
Patients also mentioned the lack of time and more importantly, perseverance.
‘I know the benefits of regular exercises, but it’s really easier said than done. I am so exhausted to even move my legs after work every day. I do want to know whether there is a better way to set myself in motion.’
[P7]
Theme 8: Complications
Screening of complications is recommended by diabetes guidelines. A comprehensive introduction to complications in plain language should be available.
‘There must be a session for (chronic) complications, especially the screening part.’
[H4]
‘…How to prevent and detect early signs of complications.’
[H5]
‘If we could know what complications feel like, probably we would put more attention to them.’
[P4]
Theme 9: Question-and-answer
An opportunity for further discussions with HCPs and experienced patients is considered a good summarization of the whole course.
‘There need to be a part where patients can freely and intensively ask whatever questions they have during the course.’
[H1]
‘Q&A must be included… To guarantee that each attendee can have at least one actual problem solved.’
[P5]
Format of delivery
Theme 1: Multidisciplinary team combined with companion support
SEPs in other countries are mainly conducted by a diabetes education nurse and a dietician. Nevertheless, most HCPs interviewed embraced a multidisciplinary team of educators, with psychologist and physical therapists joining the teaching.
‘A multidisciplinary team is essential. Different contents should be elucidated by specific specialists—diets by dieticians, dose adjustment by diabetologists, and likewise.’
[H4]
On the perspectives of patients, companion support was more focused. Some value ‘personal experiences’ from other patients over professional opinions. Some are more likely to listen to and hence gain strength from people in the same condition.
‘Experiences from well-controlled patients will be quite valuable. ‘Prolonged illness makes the patient a good doctor’. We cannot learn those from textbooks or professionals. Plus, they can inspire us to never lose hope.’
[P12]
Theme 2: Face-to-face education followed with distal learning
Face-to-face group learning was still considered a more powerful way of education by all participants. But different from the education form that are now generally used for T2D patients in China, ‘small-group education’ was preferred for T1D. Meanwhile, with the rapid development of mobile health (mHealth) technologies, authoritative and systematic distal learning on diabetes apps was largely welcomed as adjunctive.
‘I prefer patients sitting together where we can learn from each other. But I’m not good at memorizing things. It would be very helpful if we can watch teaching videos back home.’
[P4]
‘Small-group teaching plus distal learning is better. Distal learning should be in video format, more direct and straightaway.’
[H8]
Theme 3: 2- to 3-day programme held on weekends or holidays
Most interviewees agreed that the length of face-to-face education should last at most three days.
‘Weekends are good choices. It won’t conflict with any work. Besides, I think it will be too much to digest if the course lasts for over 3 full days.’
[P8]
Quality assurance
Questions about quality assurance were only set for HCPs. Three themes useful for developing an assessment system were identified: ‘After-class quiz’, ‘Patient’s feedbacks’, and ‘Long-term evaluation of effectiveness’. While the first two methods mainly aims at examining instant usefulness, general acceptance, and understandability of the programme, the latter will be used to evaluate effectiveness so as to provide evidence for refinement of SEP in the long run.
‘A quiz held right after class is the most straight forward way to test the acceptance and instant effectiveness of teaching. You could know from their responses how well they have grasped during class, and what needs to be elucidated again.’
[H2]
‘An extremely important indicator is patients’ responses, such as their feelings, degree of satisfaction, among others.’
[H10]
‘I think the ultimate evaluation needs to be thorough—both biomedical and psychological outcomes.’
[H3,H5,H8]
Part 2: Delphi consultation
All 17 themes obtained consensus. Results are shown in Table 3. Therefore, all items were preserved and no more rounds for Delphi were required. According to experts’ suggestions, the research group modified the curriculum in i) changing the Chinese name of each lesson to make the course more intriguing, ii) splitting ‘insulin’ to ‘knowing insulin’ and ‘insulin dose adjustment’, iii) including knowledge on DKA in the session ‘complications’, and iv) fixing the course into 2-day held on weekends.
Part 3: Preliminary courses
Totally, 20 T1D patients (Appendix Table S4) attended and 3 family members audited the courses. Degree of satisfaction was 100%, and all attendees rated the programme as ‘strongly helpful’. 13 patients expressed their gratitude for this programme in comments. Mean correct rate of the quiz was 70%, and most mistakes were made in dose calculation. Accordingly, ‘managing pressure’ was broadened to ‘managing psychological issues’, the teaching of ‘carbohydrate counting’ and ‘insulin dose adjustment’ were modified to improve intelligibility, and lunch break was prolonged to 2 hours. Class schedule is shown in Table S5 (Appendix). The final version of TELSA design is shown in Table 4.